Cited by 204Ethics in Clinical ResearchDementia and Cognitive Impairment ResearchAlzheimer's disease research and treatments

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Obstacles And Opportunities In Alzheimer’s Clinical Trial Recruitment

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Watson, Jennifer L., Ryan, Laurie, Silverberg, Nina, Cahan, Vicky, Bernard, Marie A.·2014·Health Affairs

DOI 10.1377/hlthaff.2013.1314PMC PMC4167360

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Abstract

The 2012 National Plan to Address Alzheimer's Disease set an ambitious goal: to both prevent and effectively treat Alzheimer's disease by 2025. To reach this goal, tens of thousands of volunteers will be needed to participate in clinical trials to test promising new interventions and therapies. To mobilize these volunteers and their health care providers to participate in future clinical trials, it will be necessary to achieve a better understanding of the barriers keeping people from participating in Alzheimer's research; form innovative partnerships among researchers, health care and social service providers, and the public; and develop more-effective outreach strategies. In this article we explore recruitment issues, including those unique to Alzheimer's studies, and we suggest concrete steps such as establishing a structured consortium linking all of the registries of Alzheimer's trials and establishing new partnerships with community and local organizations that can build trust and understanding among patients, caregivers, and providers.

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Bennett, B., Freckelton, I. R., & Wolf, G. (2023) · Oxford University Press eBooks · doi:10.1093/oso/9780192896742.002.0008
List of Abbreviations
Bennett, B., Freckelton, I. R., & Wolf, G. (2023) · Oxford University Press eBooks · doi:10.1093/oso/9780192896742.002.0009
Past Legal and Regulatory Responses to Infectious Diseases
Bennett, B., Freckelton, I. R., & Wolf, G. (2023) · Oxford University Press eBooks · doi:10.1093/oso/9780192896742.003.0002
Domestic Laws and Emergency Measures
Bennett, B., Freckelton, I. R., & Wolf, G. (2023) · Oxford University Press eBooks · doi:10.1093/oso/9780192896742.003.0005
Law, Regulation, and Rights: Reflections on the COVID-19 Pandemic
Bennett, B., Freckelton, I. R., & Wolf, G. (2023) · Oxford University Press eBooks · doi:10.1093/oso/9780192896742.003.0013
Table of Legislation
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A Global Emergency
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Table of Cases
Bennett, B., Freckelton, I. R., & Wolf, G. (2023) · Oxford University Press eBooks · doi:10.1093/oso/9780192896742.002.0010
Dedication
Bennett, B., Freckelton, I. R., & Wolf, G. (2023) · Oxford University Press eBooks · doi:10.1093/oso/9780192896742.002.0004
Copyright Page
Bennett, B., Freckelton, I. R., & Wolf, G. (2023) · Oxford University Press eBooks · doi:10.1093/oso/9780192896742.002.0003
Civil Liability, Regulation, and Accountability
Bennett, B., Freckelton, I. R., & Wolf, G. (2023) · Oxford University Press eBooks · doi:10.1093/oso/9780192896742.003.0009
Preface and Acknowledgements
Bennett, B., Freckelton, I. R., & Wolf, G. (2023) · Oxford University Press eBooks · doi:10.1093/oso/9780192896742.002.0005
COVID-19 and Workplace and Occupational Health and Safety
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Development of COVID-19 Treatments and Vaccines
Bennett, B., Freckelton, I. R., & Wolf, G. (2023) · Oxford University Press eBooks · doi:10.1093/oso/9780192896742.003.0011
An Innovative Approach to Recruiting Participants for Dementia Research: Primary Care and Researcher Perspectives
Lee, L. S., Hillier, L. M., Patel, T., Lu, S. K., Lee, M., & Lee, C. (2023) · Neurodegenerative Disease Management · doi:10.2217/nmt-2022-0040
Age-related disease: Central nervous system
Fossel, M. (2024) · Elsevier eBooks · doi:10.1016/b978-0-443-15500-0.00005-0
Apolipoprotein E4 Carriers as Clinical Trial Subjects
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Alzheimer’s and Dementia Research Coverage in News Media Outlets Consumed by Population Groups that Are Underrepresented on Alzheimer’s and Dementia-Focused Research Registries
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Patient voices to enhance concussion research participation: an exploratory qualitative study
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Alzheimer’s Disease Clinical Trial Decision-Making Among Patients with Mild Cognitive Impairment and Their Study Partners
Cox, C. G., Birnbaum, A., Salazar, C. R., Witbracht, M. G., Tam, S. P., Thai, G. T., Sajjadi, S. A., Gillen, D. L., & Grill, J. D. (2025) · AJOB Empirical Bioethics · doi:10.1080/23294515.2025.2576830
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Additional file 1 of Gauging innovation and health impact from biomedical research: survey results and interviews with recipients of EU-funding in the fields of Alzheimer’s disease, breast cancer and prostate cancer
Pistollato, F., Campia, I., Daskalopoulos, E. P., Bernasconi, C., Desaintes, C., Virgilio, S. D., Kyriakopoulou, C., Whelan, M., & Deceuninck, P. (2023) · Figshare · doi:10.6084/m9.figshare.23606929
Additional file 1 of Recruitment of pre-dementia participants: main enrollment barriers in a longitudinal amyloid-PET study
Bader, I., Bader, I., Lopes Alves, I., García, D. V., Vellas, B. J., Dubois, B., Boada, M., Marquié, M., Altomare, D., Scheltens, P., et al. (2023) · Figshare · doi:10.6084/m9.figshare.24494206
Additional file 1 of Experiences of and recommendations on clinical trial design in Alzheimer’s disease from the participant’s point of view: a mixed-methods study in two clinical trial centers in the Netherlands
Ottenhoff, L., Vijverberg, E. G. B., Visser, L. N. C., Verrijp, M., Prins, N. D., van der Flier, W. M., & Sikkes, S. A. M. (2024) · Figshare · doi:10.6084/m9.figshare.26580236
Additional file 2 of Gauging innovation and health impact from biomedical research: survey results and interviews with recipients of EU-funding in the fields of Alzheimer’s disease, breast cancer and prostate cancer
Pistollato, F., Campia, I., Daskalopoulos, E. P., Bernasconi, C., Desaintes, C., Virgilio, S. D., Kyriakopoulou, C., Whelan, M., & Deceuninck, P. (2023) · Figshare · doi:10.6084/m9.figshare.23606932
Exclusions affect representativeness of Alzheimer's disease trial participants
Ashford, M. T., Tank, R., Kabeto, M. U., Nosheny, R. L., Weiner, M. W., Weir, D. R., & Langa, K. M. (2026) · Alzheimer s & Dementia Translational Research & Clinical Interventions · doi:10.1002/trc2.70191
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Authors: Watson, J. L., Ryan, L., Silverberg, N., Cahan, V., & Bernard, M. A.
Affiliations: National Institutes of Health (US)
National Institute on Aging (US)
ORCID: Bernard, Marie A.
Venue: Health Affairs
Publisher: Health Affairs Publishing, LLC
Published: 2014-04
Volume: 33
Issue: 4
Pages: 574-579
ISSN: 0278-2715 (ISSN-L)
1544-5208
DOI: 10.1377/hlthaff.2013.1314
PMC: PMC4167360
OpenAlex: W2044038526
Cited by: 204
References: 26
Citations by year: 2026: 10 · 2025: 14 · 2024: 16 · 2023: 44 · 2022: 32 · 2021: 25 · 2020: 20 · 2019: 14 · 2018: 19 · 2017: 7 · 2016: 3
FWCI: 3.30
Type: journal article
Language: en
Open access: green
www.ncbi.nlm.nih.gov
Locations: Health Affairs (publishedVersion)
PubMed (publishedVersion)
PubMed Central (acceptedVersion)
Funders: National Institutes of Health (Z99 AG999999)
Topics: Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
Life Sciences › Neuroscience › Cellular and Molecular Neuroscience › Alzheimer's disease research and treatments
Keywords: Alzheimer's disease, clinical trial recruitment, barriers to participation, research volunteers, community partnerships, outreach strategies, research registry
MeSH terms: Alzheimer Disease, Clinical Trials as Topic, Humans, Minority Groups, Registries, Patient Selection, Physicians, Primary Care, Asymptomatic Diseases

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